On a typical weekday, Sophia's day starts out the same as Jayden's, with an uninviting wake up call from me at 7:30 am. Then it's off to have breakfast, in her big girl chair up at the table with Jayden and me. Of course Sophia gets her breakfast through her feeding tube, but she is also offered real breakfast food, just like Jayden, and is encouraged to try it. She may play with it and get a taste or two in her mouth, but usually breakfast isn't too exciting. After that it's time to get dressed for the day, diaper change and a comfortable outfit to play in. Then we move into Jayden's room to get her dressed and ready for preschool. Sophia likes to brush hair, so we let her brush our hair and make us look perdy for the day :) On Mondays, Sophia's friend Karla comes over before school to play with Sophia in the morning, and Mommy gets a little peace and quiet! On Tuesdays, we both drop Jayden off at school, then come home and play for a bit, then Karla comes back for some more Sophia time. Wednesdays we have physical therapy in the mornings and Sophia gets her walking workout, hardcore! Which by the way, is paying off!!! We are going to have a full time walker any day now, I just know it!!!! Then Thursday mornings are all about Mommy and Sophia. We play and sing and dance and giggle till we just can't take it anymore! And Friday's are our free day! It's a day that consists of just me and my girls and we do whatever our little hearts desire that day. Then each day we have lunch, again at the table, together. Sophia is once again fed through her tube, but is also given an edible lunch to consume through her mouth. Lunch is more exciting and usually we get bites of food in her mouth, but still not enough to make a meal out of. After lunch we play! Outside, inside, barbies, blocks, it doesn't matter. We just play, play, play....till I wear her out! Then it's naptime for my little one. Sophia also gets another feed during naptime, just to keep her up on her caloric intake for the day, we need five tube feedings a day right now. After nap, it's more playtime for these three girls, while we wait for Daddy to come home from work. Then supper is the same as lunch and breakfast, except Daddy is home to eat with us, as a family, all four of us. After supper is more playtime, and usually a family walk around the neighborhood. Then bathtime, which the girls love, and bedtime, which Mommy loves! It's a peacful night usually for Miss Sophia, until her early bird wake up call to start the next day!
How much more "normal" can you get? Sophia sleeps, she eats, she plays, she laughs and engages 100% in her surroundings. Of course we have to throw in a trip or two now and again up to Riley for routine checkups and an occasional weight check at our local pediatrician, but those are all things that have slowed down for us TREMENDOUSLY in the past 12-18 months. The bottom line is, Sophia is as much a part of this family as anyone else. She does EVERYTHING that we do. She goes EVERYWHERE that we go. And that will never change.
PS: Sophia had her annual cardiology appointment today at Riley, and every thing looked FABULOUS! This girl continues to have a HEALTHY HEART!!!!
trying to post again.
ReplyDeleteWill Sophia eventually get rid of the feeding tube? I am sure you have explained before. Is it just a matter of her not wanting to eat yet?
Maureen
You were able to make a comment!!!! :) There has to be an easier way, wouldn't you think?? LOL Anyway, yes we have every reason to believe that eventually she will no longer need her feeding tube. She is swallowing a handful of foods and drinks some water, but nothing to amount to a whole meal. We are working with a new speech therapist and she very good, but baffled at times with what Sophia will eat and what she won't eat. Basically, Sophia does what she wants, when she wants :) and that's with EVERYTHING! We still have a long road ahead in this eating journey, but I am very confident that we will have a huge break through and been on our way to chicken nugget happy meals :) (I actually have a post coming up on her feeding :)
ReplyDeleteDixie